It is the ultimate taboo. Losing a baby during pregnancy or a few hours after birth is an ordeal no one talks about. Distraught parents feel alone. A situation which is not extraordinary, but which remains behind closed doors. The Journal took the time to interview specialists and families about a grief unlike any other.
When you lose a parent you are an orphan. However, there is no term to describe the person who loses his or her child, the pain is undoubtedly too immense to put into words. Monique Fey, director of Initiativ Liewensufank, wrote a book about her experience and started the consultations, which she has been doing for years now. She lost her twins due to a miscarriage, but it was the loss of her daughter shortly after birth in her first pregnancy that had the greatest impact on her. It was during routine check-ups she learned that her daughter had a diaphragmatic hernia: This describes the formation of a breach in the diaphragm muscle, through which the viscera of the abdominal cavity move up into the thoracic cavity and compress the lungs.
The doctors recommended a medical termination of pregnancy, but the couple believed in it: "I did a lot of research, my husband and I agreed to try surgery because I wanted to give her every chance, I had seen children where it had worked." Unfortunately, their daughter died following post-operative treatment, 17 days after birth. Monique Fey will never forget the words of a doctor, "I told you so", a real stab in the back. It was when their second daughter was born that the trauma of the first birth came back. Having difficulty finding help from her family, Monique Fey turned to the Omega 90 association, which offers discussion groups.
Drawing on her experience as a neonatal nurse in Brussels, the specialist recalls that one third of pregnancies end in miscarriage, i.e. within the first twelve weeks of pregnancy. But it takes on a whole new dimension when the pregnancy ends at an advanced stage. The cases are diverse: miscarriage at different stages, sudden infant death, in utero or a few hours or days after birth. Other fatal malformations are the cause of termination of pregnancy for those who do not wish to continue the pregnancy.
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